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Joined: Jan 2004
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Very_Addicted_to_AS_Kickin
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Question: "Would I do it again?"

With what I know now, no. Reason being, that I 'don't think' it was necessary in the first place.

Left shoulder had been playing up for several months, and was getting really bad. Interrupted sleep could hardly use left arm, difficulty in driving - manual change, small truck. Then started Pilates. And was responding very well indeed. Had got back a deal of ROM (range of movement) and, some strength. Began to have heavy doubts as to going ahead with the surgery. Really wanted a second opinion - and had IDeed a top ortho surgeon, upper limb (who now is with the Wrightington). Unfortunately, I was so darn broke and at that point in time, could only go outside my PCT area by going privately. Sigh.

Went ahead with the surgery - and this in spite of my heavy feelings of *Don't go there* doubts. The surgery was a bit of a bodged job. Prothesis 'seemingly' a tad too big, much tendon damage, much tissue damage, much muscle damage. He was ALSO supposed (!) to have done a SAD/ACJ, operating notes said he had done, but, when I went to the Nottingham for a second opinion, surgoen there, looked at X-rays and said, NOT DONE!

I was in terrible pain for 9 months. Could not lift left arm above 10" to the front, and not much more to the side. Getting dressed etc etc was diff. Could not drive, could not even hang out the washing. Nothing. Tried one day to tie in my clematus, impossible. Could NOT lift arm to tie. Agony. All the time in very bad pain - in tears most days. Had to sleep on the settee as could not lie down: had to sleep propped up. So, back supported upright in corner of settee, legs on footrest/pouffe.

Bodger surgeon 'washed his hands of me'... Tried to stuff a cortisone injection into my shoulder, I refused. Knew enough by then to know 'NO.' Cortisone can wreak havoc with shouler tendons. Weakens em. So, went for the second opinion, and then we found out...ho-hum. (Should have sued the &*%^$úD)

After the SAD/ACJ followed by *excellent physio therapy, matters started to improve. My ROM now is excellent but, still got the tendon and tissue and muscle (supraspinatous) damage and of course the catching due to the prothesis being a tad too big. Most times am pain free, but temps-en-temps...not too good.

Right shoulder has started the same run around. Receiving PT (not much good over here, but augumenting with what I know) and slowly right soulder is improving. Plays up sometimes, but...NOT going there again. No more replacements, thank you. I have trust in only one hospital and in only one surgeon. IF it gets truly terrible, then will return to the UK - but only for an opinion.

IF the surgery had not been bodged, then...

But yes, did scream, and scream in agony. And it went on and on and on. Until I got the SAD/ACJ surgery, nine months of hell.

Strangely. It was only from that time that my face became completely lined, wrinkled like linen wrinkles. I hardly had any lines at all before, but now? Completely wrinkled up. And my hair went white blond (from being dark red) almost overnight. My s-in-l when she saw me, had difficulty in hiding her surprised horror! (She hadn't seen me in about a 12 month, and had came over to help out.)

But our cases are different Alan. Know that my cervicals are playing up. Every day, at end of day and first thing in the morning, and now the endless headaches. But, still could not do what you did. Frankly. Am on my own. It don't matter much if am around or not, not really. So, would prefer to be out of it. Blessed relief. 'Smile'. But somehow keep on keeping on.

Molly C (France)


MollyC1i - Riding OutAS
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I would like to add that I am also Diabetic and have C O P D so in my case its even more risky from the healing point of view.I realise that what Alan says is right it has to be told in truth.I just feel that maybe not so much detail in waking up screaming in pain and hallucinations ect. I know about morphin and what it does to your brain and understand that been there.Im just concernd that putting it the way he has someone who is going to have the operation will be terrified.I am a person who has sufferd a lot of pain in my life with operations ok not as serious as this but do realise that I would suffer terrible pain as Alan said but when its put like that it even put me off.As the people on here who have or are thinking of having this done know it is a very difficult desision to make.I worry more for my wife and children more than myself
I would be 60 miles from home and it would be extreamly difficult for them to be there for me which would break there hearts. Apart from my wife who would find it very very hard My daughter who I brought up on my own and is very very close to me and worries about me all the time anyway would really suffer.So Im not saying what Alan has written is wrong I just think some of it should be a little less dramatic.I know some who read what Ive said will think what a pratt and thats fine but different people have different emotions and the way things are written can have a terrifying effect on some.Alan and myself have agreed to disagree on this point and thats fine I just dont want anyone to think Im saying what Im saying for the sake of it.Sorry to ramble on its just my opinion.
Kevin Hello mig

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Very_Addicted_to_AS_Kickin
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Alan - the President of the AFS (SpondyArthrite France) Marie-Laure Bigourie had a huge spinal op. She was unable to sit down for three months... Could ONLY lie down or stand up! (Beggars very many questions...) Anyhoo. She was in hospital for weeks - somewhere down in the Charentes area (or so I understand/misunderstand!) Her whole spine was??? (all in French, had difficulty in following completely). But a HUGE op.

After her recovery she can do everything. BUT, dunno 'quite' what she had done! When I get to the next Association monthly meeting, will endeavour to find out. (No one speaks a single word of English. Breton - scratching head! - and French only.)

Molly C (France)


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Seems that my writings have caused some consternation. I apologise for that.

What I write though is a true account and I am unable to get away from that, thus it is perhaps best if I leave it now as is! I will be writing the rest (for this thread has certainly sparked an interest in me to complete it) but will not put out on here for public consumption.

If others are still interested then I shall send it to them in PM.

Molly I shall research Madame Bigourie, and send you a new shoulder, Asda do them now...lol

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Very_Addicted_to_AS_Kickin
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Quote: "Molly I shall research Madame Bigourie, (great) and send you a new shoulder, Asda do them now...lol."

Heigh, ensure NOT a shoulder of lamb cause this ere is ancient mutton, all wrinkly as well as...hahaha

-----

An yes, please. Want to find out the rest of the story. Want to hear more of nurse strangelove and nurse grim-efficiency, and, and, and. Also, the physio. Whom you had, what process did they use. How you coped. Especially the parts where you asre coming through the hell-on-earth and bright gladness arrives. And your kiddies. Their reaction to straight up an down dad.

Terrif man. Thanks.

Molly C (France)
Keeping on Keeping on (you betcha, gotta 'do' innit!)


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Hi Kevin,.. I am sure that no one here thinks you are a pratt and can appreciate and respect your opinion and feelings on this. I worry you are somehow feeling pressure by what you're reading here and really hope that is not the case. No two cases would be alike in terms of risks vs benefits so direct comparison, as you've noted, is not possible. Everyone's health situation is highly individual!

After all of our encouragement in asking Alan to keep going with his story, my own hope is that he will continue on and let it flow as it has, just naturally. I agree that his writing is quite powerful, yet feel (imo) that it's important not to gloss over the truth, and worry that he shouldn't feel inhibited in his style of telling it as it was.

Alan, as a suggestion, you might(?) include a little disclaimer of some sort in the title or at the beginning of your next chapter, just to forewarn readers that the details may not be suitable for all? That could help folks decide for themselves whether they wish to continue reading any further. I already know I will! Hey, there is even a little yellow 'warning' post icon! Well, it's just a thought.

Hugs to you both!!
mig

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Hi Mig
I never feel pressured by any one or anything the decisions I make will be made by me and my family only no one else. I made the comments I made becuase I felt It could influense other peoples decisions like the person who started this post and is looking to be straight again.
I have told Alan he should continue and finish hes story so every one who wants can read it.If anyone has been affected by the last chapter will hopefully get encouragment from the rest.I think the Idea of a disclaimer is a good idea. I get the impresion I have upset Alan for that Im sorry but I will always speak my mind.
Kevin

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Hi mig,

Yes, I should have said that I was aware that Alan had TWO wedges. My post was actually directed at Kevin, who said his doctor told him he would have to break every joint in the spine to do the surgery, which just doesn't sound right.

Brad

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Alan - I am fascinated by your story and gripped by your storytelling style. If you decide not to post the remainder in a public forum, I would be very pleased if you would PM me. It may be necessary to send you a personal email that you can send an attachment to. Otherwise, it could get difficult for you to send it out if you receive many requests like this.


Wendy

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Kevin - I'm glad you speak your mind just as I'm glad Alan is telling his story as he experienced it. I am totally impressed and encouraged by both of you and what you have to say and share. Thank you both.


Wendy

Rheumatoid Arthritis
Methotrexate, Celebrex, Plaquenil
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